7th Patient Centricity & Collaboration World Congress 2025 Europe

Amplifying Patients Voice in Research, Drug Development and Healthcare

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Patient meets Innovation & Collaboration

Patient empowerment and understanding to inspire and create a meaningful impact.

Facilitate Live is very pleased to welcome you to our upcoming Patient Centricity and Collaboration World Congress 2025 Europe.
The two-day Congress aims to build meaningful collaborations within the industry, advocacy groups, clinicians, researchers, and most importantly, patients and their caregivers. Gain practical strategies and best practices on challenges, innovations, technologies, and concepts in achieving this goal.

The congress focuses on a “Amplifying Patients Voice in Research, Drug Development and Healthcare”.

Patient-centricity is a vital aspect in the research and development of  biopharmaceutical products, disease management, designing a treatment, clinical trial, or other health solutions. In order to create a patient-centric solution, one must truly embrace a collaborative endeavor with the patient and their caregivers. Establishing a patient-centric solution involves getting feedback from real patients and their loved ones, and making decisions based on their medical conditions, experiences, needs, perspectives, and priorities.

In the current climate where the patients are increasingly becoming more empowered, Lifesciences and Pharmaceutical companies should confront the status quo and welcome the opportunities to embrace a wide range of patient-centered perspectives presented by an emerging ecosystem. While the technology-driven world poses challenges, it also holds opportunities to build a positive patient experience by coordinating the health ecosystem to center on the patient. Reevaluating how it develops and delivers drugs to improve experiences and outcomes and also to continuously adapt and transform to meet the evolving needs of patients.

The industry has come a long way with utilizing a patient-centered approach. The concept has gone from a buzzword to a potential trend, to a perceivable goal. Whilst the industry has advanced in recent years, the evolving healthcare model and ecosystem brought forward by advances in technology and more involved, empowered patients, means true patient centricity is a continuing quest and a compelling commitment.

We look forward to meeting you at the Congress!

Sincerely yours,

Jocelyn Raguindin
Conference Director
Paradigm Global Events / Facilitate Live 

GAIN LATEST INSIGHTS ON:

WHO SHOULD ATTEND?

This Congress is beneficial to patients, pharmaceutical, biotech companies, researchers, physicians, patient advocacy groups, regulatory agencies, technology, and healthcare companies.

Network with Presidents, Heads/Chiefs, VPs, Directors, and Managers in the area of:

Key Industry Expert Speakers 2025

Emma Sutcliffe

Global Patient Officer

Ipsen

Wendy Erler

VP, Global Head Patient Experience, Advocacy and Insights,

AstraZeneca

Janelle A. Goins,

Sr. Director, Global Community Engagement & Advocacy

Gilead Sciences

Ify Osunkwo

Chief Patient Officer Rare Disease

Novo Nordisk Rare Disease

Dr. Holger Storcks

Public Affairs and Patient Advocacy Director DACH

Kyowa Kirin GmbH

Shannon Altimari

Senior Director, Patient Engagement, Global Oncology Lead

GSK

Dakar De La Cruz

Director, Global Patient Insights & Solutions

Alexion Pharmaceuticals, Inc.

Samantha Knott

Global Patient Partnership Leader

Roche

Michaela Dinboeck

Head of Patient Engagement

Novartis

Rebecca Lisle

Head of Patient Advocacy EU/INT

Jazz Pharmaceuticals

Christiane Sonntag

Patient Services Manager

Kyowa Kirin GmbH

HAYLEY CHAPMAN

Senior Program Director

The Synergist

JOSIE GODFREY

Director, JG Zebra Consulting, Co-Founder and CEO

Realise Advocacy

Lindsay Birrell

Co- CEO, Realise Advocacy, Chair of trustees

Medics 4 Rare Diseases

Lara Bloom

President and CEO

The Ehlers-Danlos Society

Robert Mitchell-Thain

CEO

PBC Foundation

Bob Stevens

Group CEO

MPS.SOCIETY

Dawn Lobban

Co-founder & Managing Partner

Amica Scientific.

Pascal Derrien

Chief Executive Officer

Migraine Ireland

Melanie Dixon

Trustee

Cure DHDDS

Rasmus Hjorth

Head of Communication

James Lind Care

CAROLE SCRAFTON

CEO & Co-Founder Patient Advocacy Organisation

FibroFlutters

DR LIZ CLARKE

Visiting Lecturer and Patient Engagement Theme Lead

Centre for Pharmaceutical Medicines Research, Kings College London

Senior Representative

Available Shortly

NIHR

Nigel Nicholls

General Manager UK/Nordics & Baltics

Egetis Therapeutics AB

Amit Aggarwal

Executive Director, Medical Affairs and Strategic Partnerships

ABPI

Dr Sumira Riaz

Chartered Health Psychologist and Patient Engagement Consultant

Unboxed Psychology

Gunnar Schroefel

Senior Director Global Patient Advocacy and Head of the European Patient Advocacy Team

Daiichi Sankyo

Schedule

Content Rich Program Agenda!  Featuring Keynote Presentations, Stream Sessions, Panel, and Round Table Discussions.

Emma Sutcliffe, Founder, International Society of Patient Engagement Professionals (ISPEP)

TRENDS & STRATEGIES IN INTEGRATING PATIENT VOICE

  • The value of engaging and communicating with the patient in every part of the clinical research process
  • Examining the right approach for patient and industry to positively impact healthcare costs and patient outcomes through patient engagement
  • How can patient expertise create significant value to the industry?
  • What are the best practices and strategies to guarantee that patient centricity is at the forefront of pharma?

Moderator:

Emma Sutcliffe, Founder, International Society of Patient Engagement Professionals (ISPEP)

Panelists:

  • The era of evidence-based engagement leads to a new type of patient science
  • Patient Engagement is a highly developed skill set and an established discipline
  • ISPEP comprises patient engagement professionals of the highest integrity
  • At ISPEP, members are ‘all in’ and committed to change leadership

Emma Sutcliffe, Founder, International Society of Patient Engagement Professionals (ISPEP)

  • Bullet points to follow

Dr. Holger Storcks, Public Affairs and Patient Advocacy Director DACH, Kyowa Kirin GmbH

Christiane Sonntag, Patient Services Manager, Kyowa Kirin GmbH

 

  • Systematic PE and Advocacy is in evolution
  • Stakeholders in the HC system are accelerating efforts to involve patients
  • Similarly Industry is looking for acceleration of PE
  • Case study of NVS on the evolution
    Focused approach on PE and Advocacy in a new model
  • Key areas of PE in Deve to drive impact
  • Early successes (examples from a few disease areas)

Michaela Dinboeck, Head Patient Engagement Global Product Strategy, Novartis Pharma

  • Sharing insights into a live real-world example of this type of partnership
  • Explaining the roles and responsibilities in achieving a positive outcome
  • Providing key learning to the evolving process
  • Supplying the audience with guiding principles for future partnerships
  • Learn about the latest technologies that can improve the efficiency and effectiveness of clinical trial design, addressing issues like increasing complexity
  • Discover the principles and best practices for clinical trial design that can increase the likelihood of success, through a combination of literature analysis and practical experience
  • Examine the challenges faced by patients during clinical trials and learn about potential solutions that can reduce the burden and increase the benefits for patients
  • Understand where patient centricity can advance the interests shared by industry and the patient community
  • Consider how focused goals and programs can strengthen research and development, commercialization and access
  • Focus on opportunities to integrate patients, caregivers, consumers and advocates’ key concerns and insights into company plans and decision making
  • Discuss applications of this targeted approach to your patient centricity goals and programs

Afternoon Stream Sessions

ACCESS & COLLABORATIONS

  • Industry often has many deep relationships across TAs and expertise within the advocacy community and with various experts on topics within patient centricity
  • Bringing these groups together along with subject matter experts on topics critical and relevant to the community is very valuable in helping to initiate partnerships and sharing of best practices that can benefit the community and elevate patient centricity
  • The utilization of workshops and having defined outputs as a part of the convening helps the community take the learnings into their everyday advocacy work

Janelle A. Goins, Sr. Director, Global Community
Engagement & Advocacy, Gilead Sciences, Inc

  • Learning: Balancing health system priorities and
    resources to address patient community needs.
  • Creating policy to end disparities and open access to
    new regenerative and translational therapies.
  • Increasing funding and technical support to CBOs for
    community outreach and education efforts.
  • Emphasize the need for patient voices in drug development and healthcare delivery.
  • Explore the Role of Patient Experience Data (PED) and discuss how effective Patient Engagement (PE) informs PED and aligns healthcare decisions with patient needs.
  • Introduce key tools for Patient-Centric Initiatives: Present the PE & PED Integrated Navigator and the Patient Experience Dossier (PED) template for streamlining the generation and use of patient insights.
  • Share strategies and provide practical approaches for integrating patient engagement into the generation and use of PED
  • Foster Collaborative Partnerships: Highlight successful collaborations among patients, researchers, and industry to strengthen use of PED
  • Offer takeaways that attendees can implement to enhance patient engagement in their organizations.

Hayley Chapman, Sr Program Director, PFMD

  • Have patient “Advisors” on a panel for clinical trials.
  • Have a patient advocate/liaison collaborating.
  • Patient Surveys

Dakar De La Cruz, Director, Global Patient Insights & Solutions, Alexion Pharmaceuticals

  • Education of the process of clinical trials
  • Listen to the Patient needs and help them to understand what the focus of the trial is.
  • Understanding Pharmaceutical costs of trials

Carole Scrafton, Director & Co-Founder, Flutters and
Strutters

  • How we might innovate our way out of increasing erosion of trust between patients and “the system”, by learning from CPG use cases, nonprofit communications, digital health solutions, shifting trends in consumer media consumption, shared accountability, and increased federal protections.

RESEARCH & DEVELOPMENT

  • What we know
  • What we should know
  • What we should do ?

Pascal Derrien, Chief Executive Officer, Migraine
Ireland

  • Receiving a life changing diagnosis
  • How DHDDS mutations affect individuals
  • Creating a research community
  • Overcoming barriers
  • Our plans and hopes from the future

Melanie Dixon, Trustee, Cure DHDDS

  • Across the spectrum of disease, from common to rare, patient data is becoming a critical driver of drug discovery, development, diagnosis,
    commercialization and inclusive and equitable access to trials and treatments.
  • Why clinical trials are struggling with patient recruitment, diversity in the trial participant population and retention of the clinical trial participants and how all of these problems are linked to the overall system which clinical trials are formed around.
  • Possible solutions on how to fix these problems and move forward to improve clinical trials and drug development all together.

Rasmus Hjorth, Head of Communication, James Lind
Care 

  • Integration of the patient perspective into the development process
  • Challenges and strategies for improving study protocols
  • Streamline your clinical trial process to drive enrollment

Carole Scrafton, Director & Co-Founder, Flutters and
Strutters

CHALLENGES & POTENTIALS OF PATIENT ENGAGEMENT

  • Why diversity and inclusion in clinical trials are crucial?
  • Understanding critical barriers to minority and underserved patient communities participation in clinical trials
  • Equity and Inclusion of Rare Disease Patients – A Must on Many Levels
  • What can the industry do to promote more diversity in the future?
  • Latest guidelines that make healthcare more inclusive

Moderator:

Panelists:

Ify Osunkwo, Chief Patient Officer, Novo Nordisk Rare Disease

 

Ify Osunkwo, Chief Patient Officer, Novo Nordisk Rare Disease

  • Consider the patient’s perspective and lived experience when planning treatment pathways.
  • Use digital technologies and provide digital, remote, and home-based treatment options.
  • Address issues like pricing, supply and distribution, market accessibility, and regulatory frameworks.
  • Increase collaboration and alignment between EU Member States to simplify evidence generation.

Amit Aggarwal, Executive Director Medical Affairs & Strategic Partnerships, ABPI

The implementation of patient engagement is by no means uniform, varying massively between different contexts and organisations. This talk will:

  • Reveal some intriguing mechanisms driving human behaviour
  • Challenge the efficacy of a ‘fuel-based’ mindset
  • Uncover the impact of frictions in impeding progress
  • Show how the COM-B model can be utilised to diagnose difficulties and design targeted interventions to overcome them

Dr Liz Clark, Visiting Lecturer & Patient Engagement Theme Lead, King’s College London

  • Discuss current challenges blocking effective Patient Engagement
  • Putting the patient first achieves the best experience and outcome for that person and their family
  • Digital patient engagement tools and personalized care models to enhance healthcare experiences and outcomes.

Lara Bloom, President and CEO, The Ehlers-Danlos Society

  • The importance of data democratization
  • Common challenges in clinical data review that hinders clinical trials
  • Strategies in overcoming these challenges
  • How to seamlessly integrate data from a variety of sources?
  • How to improve safety review efficiencies and reduce the timeline to critical studies?
  • Understanding complexities and addressing challenges faced by the industry in setting up end-to end supply chain for cell and gene therapies
  • Best practices and lessons learned that guarantees effective manufacturing and delivery of CGTs to the patients who needs them the most
  • Robust technologies and innovative platforms that connects therapies with patients both in clinical and commercial scale

Senior Representative, NIHR (National Institute for Health and Care Research)

  • Review of England’s rare disease action plan
  • Lessons Learned

Josie Godfrey, Co-Founder and CEO, Realise Advocacy
Lindsay Birrell, Co-CEO, Realise Advocacy

  • What are the challenges and opportunities PAG boards encounter with Pharma?
  • Has the engagement landscape worsened or improved in recent years?
  • What solutions are they working towards?
  • What do they cite as best practice?

Nigel Nicholls, General Manager UK/Nordics & Baltics, Egetis Therapeutics AB

  • Highlight the Impact of Patient Engagement: Emphasize how integrating patient engagement (PE) can significantly enhance and accelerate ESG and sustainability commitments within the life sciences sector.
  • Analyze Key Trends in the PE-Sustainability Landscape: Present insights from PFMD’s recent analysis of life science companies, showcasing emerging trends in the integration of PE into ESG and sustainability strategies.
  • Showcase Roche’s Leadership in integrating Patient Engagement in Sustainability Strategies: Illustrate Roche as a leading example by detailing its innovative incorporation of patient engagement under stakeholder engagement in the social section of its materiality report, demonstrating a commitment to prioritizing patient perspectives.

Samantha Knott, Global Patient Partnership Leader, Roche
Hayley Chapman, Senior Program Director, PFMD

  • Recognising key areas to ensure patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation.
  • Patient’s input to improve quality, relevance, safety and efficacy of drug development
  • Challenges and opportunities for patient-centric product design
  • The role of respective stakeholders and the way they interact, from the early steps of drug development to access in real life?

Moderator:

Dawn Lobban, Co-founder & Managing Partner, Amica Scientific.

Panelists:

  • Understanding the drivers for innovation in pharma
  • Partnering with patients and placing patient well-being at the core of all initiatives
  • Real-world data and patient-reported outcomes presents the power and the potential to redesign healthcare
  • Innovative approaches for direct-to-patient assume significant importance for driving patient-centricity
  • Technologies that enhance the patient-centricity in pharma

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Testimonials

what people say

Thank you for a good experience with the PARADIGM Global Events… very high level, very good Organization, we overpassed our expectatives, we will be pending for another congress related to pharmaceutical and biotech… we learned a lot, and i think that the content of agenda was state of the art, thank you again.
Salvador Berrios
ERP/ CRM / Product Configurator Manager
The consistently high quality of international faculty was most impressive. It was also obvious that they were carefully chosen not only for their particular expertise but also for their ability to communicate the subject matter to clinical and non-clinical participants alike. As market access consultant for pharma clients of various sizes, I now feel much better prepared to explain the nuances & dynamics involved in bringing their products to market. In addition, I am in a much better position to intelligently advice my clients & help them set realistic expectations
Thomas Martin
Associate Vice President, VCGA - Quintiles
I was impressed with the organization of this event. I attend many conferences per year and find the organizers on site to be detached and not focus on good service to the delegates. This team was even providing weather forecast warning to ensure everyone was aware and made appropriate plans. Well Done.
Adriana E. Manzi
PhD, Managing Director, Atheln, Inc

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